The updates, stories, struggles and challenges of Aurelia Dittrich, a young girl first diagnosed Hypoplastic Left Heart Syndrome, a congenital heart defect, and then Osteopathia Striata with Cranial Sclerosis, and also Cyclical Vomiting Syndrome. This blog will also talk about the amazing support and love and journey of her older sister, Madison.

Friday, June 24, 2011

Who's Who

Our time in the CICU has been full of memories, good and stressful, as we see old faces and remember previous pod-mates during our past stays. Our attending is Dr. Naim, plastics is led by Dr. Taylor, Dr. Rizzi worked on her from ENT, and even her cardiac anesthesiologist has been someone we know from previous operations. All these people help Jillian and me feel at home here since everyone has a history treating Aurelia.

Dr. Naim in particular is delightful; she cared for Aurelia during our daughter's first few weeks of life and has remarkable background knowledge about our little one's needs. She so adores Aurelia that she requested her as a patient upon our admittance and routinely comes crib side just to 'get some love' from our daughter, who smiles and asks for hugs from all who come near. Dr. Taylor continues to impress us with his knowledge and affable nature, and Dr. Rizzi's bedside manner always keeps us at ease.

These are the miracle makers at CHOP. They have made this entire task seem remarkably less daunting, especially since we are looking at three very difficult months - three weeks of pain inducing jaw advancement (what is in essence daily resetting of a broken jaw, combined with additional bone growth), the subsequent final healing of her jaw and neck, open heart surgery, healing, and hopeful improvement.

Today Aurelia is much the same as yesterday. Three times she's tried to roll over (not an easy task with your breathing tube shoved down your throat and sutured to your nose) and other than that we need to keep the status quo - sedated and comfortable, not too riled up, work her feeds back up to normal amount, decrease her breast milk fortification while she's not moving around, watch for infection, and monitor her lungs and jaw.

Today's x-ray came back looking good, no signs of anything unexpected, her swelling is reasonable, and it appears we will leave her intubated throughout the weekend. Even though Aurelia is not listed as a critical airway, plastics is hesitant to extubate our girl over the weekend when fewer staff is on duty at the hospital. We won't start moving her jaw today, but we will probably start tomorrow with 2 mm increments. This is an increase from 1 mm, but Dr. Taylor believes Aurelia can handle the increase. The plan is to move her jaw and keep x-raying her until we are comfortable with tongue placement inside Aurelia's mouth, relevant to the back of her throat. I'm terribly scared of the pain this might cause Aurelia. I think I fear this process more than anything else because it will last so long; even heart surgery's pain lasts roughly four days before it can be managed by tylenol; not this....this is something that could be hurting Aurelia for weeks on end.

The ear tubes went in without problems yesterday as well, and we are putting drops in her ears every now and then to prevent infection. She's not having any trouble with those drops because, well, she's unconscious. The only other thing we are waiting to see is the progress on her trachea malacia. Hopefully there has been improvement, but we are unsure of just what's going on with that as of this point and time. Our care team is going to get the report from ENT and then we will pass that along as we find the information.

Here is our baby girl just after surgery. You can see her breathing tube up on that contraption to prevent her from having anything on her sore and swollen face.

Jillian and Charlie, this has to be torturous for you as parents, seeing your precious innocent daughter like this, totally undeserving of such pain. I think of you often, praying for God's grace and wisdom to guide you and the team of medical people who determine Aurelia's treatment, and most especially for her to get through this well with minimal suffering. This girl deserves a long and happy life.